February 10, 2016

expert reaction to global scientific community commitment to sharing data on Zika

There has been a commitment from global health bodies including academic journals, research funders and institutes “to sharing data and results relevant to the current Zika crisis and future public health emergencies as rapidly and openly as possible”.

All our previous output on this subject can be seen here.

Prof. Trudie Lang, Director of the Global Health Network, University of Oxford, said:

“This Zika outbreak differs from Ebola in that we know even less than we did about Ebola at the start of that epidemic. There are so many unknowns and the international health and research organisations need to work together to generate and share high quality evidence and data as quickly as possible to address all these questions concurrently. We are still to prove that Zika causes microcephaly, and we need to know at what point damage happens in pregnancy, should this be the case. In addition we need to develop better diagnostic tools and agree how to interpret anomaly scans to assess how these affected babies are developing.

“Alongside all these unknowns we need to assume that the link is true and so get to work on developing drugs and vaccines, as well as working on how to prevent the aedes mosquito spreading Zika virus.

“This statement from the world’s key stakeholders in research funding, conduct and publication is very important and marks the global recognition of the need to share data as quickly as possible and move aways from the old norms of how research evidence is processed and released. If data is shared more, questions can be answered faster because data can be pooled and new questions asked of that same data set by other research groups working in different areas.

“The route to publication can be slow and normally data is not made available for sharing until after it is published. This agreement allows for data to be used immediately without this preventing top journals taking these papers, even if some findings might have already been released; this is a very bold and substantial move that really does change the rules.

“However, data sharing is at the end of the research process and we must also think about how we can globally support the effort to obtain data from places and situations where there is low research capacity and gaps in evidence. If data is to be shared then it needs to be ‘usable’ – we need to ensure it is reliable and accurate and this requires research sites to be well trained and have the resources they need to collect and manage data in ways that avoid error. For data to be pooled it also needs to be collected in a standardised way in order that we are not comparing apples and pears. This requires cooperation between research groups and agreement to capture their data the same way at the outset. There are significant international efforts ongoing to work with the regions to implement research skills training and to facilitate the sharing of research documents (https://zikainfection.tghn.org/ ).

“This agreement is a very important step in the effort to tackle Zika, and future outbreaks, and it is excellent to see the lessons we learnt from Ebola being put into place. However we also need to support the generation of evidence in the first place and this needs effort and investment into research capacity development and a recognition that there are key steps before data sharing, such as good data management and standardisation, if we are to support these countries in generating this data in the first place.”

Prof. Mark Woolhouse, Professor of Infectious Disease Epidemiology, Centre for Immunity, Infection & Evolution and Usher Institute of Population Health Sciences & Informatics, University of Edinburgh, said:

“The commitment by scientific institutions worldwide to open sharing of data on Zika virus and other health emergencies is one of the most welcome developments I have seen in decades. If acted upon, this declaration will save lives.

“An effective public health response to an epidemic depends critically on the rapid collation, analysis and communication of data from multiple sources, multiple agencies and often multiple countries. Done well, this can lead to better decision making and a more effective public health response.”

* http://www.wellcome.ac.uk/News/Media-office/Press-releases/2016/WTP060169.htm

Declared interests

Prof. Trudie Lang: “Trudie is Professor of Global Health Research at the University of Oxford, is a member of the ISARIC (International Severe Acute Respiratory and Emerging Infection Consortium) network and director of the Global Health Network.”

Prof. Mark Woolhouse: “I have no conflicts of interest to declare.”